A year ago I was diagnosed with a very low rectal tumor that had progressed thru the rectum wall and into the sphincter muscles. The three local Drs I saw all told me straight out that treatment would involve an APR and include removal of my sphincter. Fortunately my health care provider did not have a local colorectal surgeon and I was offered and accepted a referral for treatment at Kaiser Permanente's huge medical center in Los Angeles. A year later I am NED and still have a fully functioning sphincter, in fact I have had no surgery whatsoever. I thought I should share my story here and detail exactly what happened.

It turns out that this cancer center had just introduced the Habr-Gama "Watch and Wait" strategy with no surgery for those patients who had a complete clinical response to chemoradiation, and I was fortunate enough to be one of the 20% or so of patients who have a complete response. My colorectal surgeon explained that the Habr-Gama strategy had been around for a number of years but was only now gaining acceptance because new studies have shown that when patients on watch and wait do have a recurrence they can undergo "salvage" surgery and the outcomes of this surgery were just as good as if they had had surgery in the first place.

To sum up if you are lucky enough to qualify for watch and wait the odds are good that you'll never have a recurrence of the disease, but if you do have a recurrence then you get "salvage" surgery and the chances of a good outcome are the same as if you had surgery in the first place. To me this seems like a no-lose proposition.

My surgeon explained that the "salvage" surgery info is very new and it's really only colorectal surgeons who keep up with the literature and attend conferences who know about it. She said it was unlikely that the info had yet gotten thru to oncolgists or general surgeons. I asked her if she was the only colorectal surgeon implementing this strategy and she replied that she knew of a number of centers thruout the US that were implementing it. She indicated they were mostly teaching hospitals because the Drs at those centers were usually most up to date. I asked about Kaiser's position on this and she implied it had been blessed by the powers that be but they were leaving the decision to implement up to the colorectal surgeons at each facility. She indicated it was spreading rapidly thru Kaiser's facilities in Southern California.

Dr Angelita Habr-Gama is perhaps the most famous and recognised colorectal surgeon in the world, She is based in Brazil, is probably close to 80 years old, and has had an amazing career breaking thru many glass ceilings in a profession dominated by men. She's definitely worth a Google.

I can provide more detail on this Habr-Gama strategy if anyone is interested.

Congrats on your 'complete clinical response" Our stories are a bit similar with regards a complete response. In my case and knowing that I would be just waiting for the next shoe to drop, (a recurrence) I if given the choice ( I was not ) would of elected to do the surgery. The surgery was tough and I had open surgery so it took much longer to heal but I got through it. Like I said earlier about the next shoe to drop I also elected to do the mop up chemo FOLFOX. In the big picture and in my mind I have done everything to prevent recurrence. Was it overkill? Maybe. I just know how I am and would still fight the battle the same way if I had the choice. The pathological complete response always trumps the clinical complete response.

The "watch and see" approach seems to improve the colostomy free survival but not overall survival. Less patients required colostomy in "watch and see " group but 9% more patients survived 3 years in surgery group.

Thank you for sharing your experience, Peter. I think this approach could be a good option for those who have the complete response to chemo/radiation. Upon talking to both my medical oncologist and radiation oncologist they are not fans if this approach. I am going to Mayo clinic for a second consult and will see what they think if it.

I had spoken to my surgeon about my CR and if maybe I didn't need to have surgery and he mentioned that they were doing that in Brazil. If I had been offered the wait and see I may have done that. Considering the side effects from the surgery I think it would have been worth the risk. When I asked my oncologist what percent it put me in to have a CR he said 8%. If only 8% of the patients get a CR it seems like a reasonable option.

9.5 years ago, when I was diagnosed with rectal cancer, I actually spoke (via email) with Dr. Habr-Gama and a surgeon in Pittsburgh (Dr. David Medich) who were collaborating on a similar idea. Instead of watch and wait....they were taking patients who had a complete clinical response, offering them an excision (either transanal or the newer transanal endoscopic microsurgery), seeing what the biopsy results from that showed and then proceeded with either a modified 'watch and wait' or the more radical surgery.

The studies done on over 2000+ specimens from patients who underwent the LAR procedure indicated that there was a strong correlation between a pathological complete response and any nodes affected. Obviously nothing is guaranteed but the results were strong. My excised specimen showed no cancer cells, all my pre-treatment tests (EUS, CT) indicated that no nodes were affected so I was comfortable with having the chemoradiation, excision and then follow up chemo. The excision isn't an open surgery, causes little to no bowel issues as the amount of tissue removed is miniscule and the rectum is able to heal itself. Personally, I feel better knowing that I had the excision and was able to get a pathology report on it indicating that in my case...no cancer cells were found.

In my mind, the problem with the 'watch and wait' strategy as a whole is simple. You have no way of knowing whether or not microscopic cancer cells are remaining in the radiated area of the rectum. I'm glad to see, at least, that chemotherapy was offered. Not to do mop up chemo would, IMO, be reckless. I know how hard I fought to have the excision and how nervous I was to find out the pathology report from my excision surgery. If I had to do it all over again, I would still opt for the excision as a biopsy tool (if nothing else). It was a relatively simple procedure....spent the night in the hospital only because of an unrelated complication and overall, I have excellent function and lead a relatively 'normal' life.

I am happy to see that in the last almost 9 years since my surgery, that surgeons and the medical community are warily starting to accept alternatives to the accepted 'standard of care' protocol. Hopefully this approach and or some modification of it will gain acceptance in the medical community that there ARE other ways to treat a specific subset of patients rather than just utilizing the more radical surgical approach. I remember reading a paper where one surgeon made an analogy to breast cancer surgery and rectal cancer surgery. The gist of it was that in breast cancer surgery we have evolved from the more radical surgery (radical mastectomy) to a less invasive surgery (lumpectomy...in some cases) while at the same time utilizing other medical treatments such as chemo and/or radiation. The author pointed out that with rectal cancer just the opposite has transpired. We've gone from excisions (without radiation and/or chemo) to the more radical surgery and have not bothered to look at potentially reversing that trend while at the same time utilizing the radiation and/or chemo to achieve similar results. I'm probably not explaining it very well but it has stuck with me and it is true. I'm not knocking the LAR procedure....there is no denying that it has improved survival rates, etc. but it does come at a cost.....one that I was very concerned about. Without surgeons who are willing to push the boundaries and without patients who are willing to participate in these 'trials', nothing will ever change.

Please, make sure you stay on top of your follow ups. I know I wasn't a fan of the every three month exams...either an EUS or a mini flex sig....but I faithfully had them done, along with a CT and bloodwork. As time passed, those exams were able to be spread out and now I am done with them, except obviously for my full blown colonoscopies. It's super important with this procedure that you stay on top of everything and IF a recurrence happens or even if you develop another polyp (which, btw, is very common in patients who have had pelvic radiation) that it is taken care of immediately.

My surgeon indicated there were very strict guidelines for admission to their Watch and Wait program. I believe this paper by Dr Habr-Gama outlines the guidelines, sorry this link only gives the abstract unless you pay: http://www.hemonc.theclinics.com/article/S0889-8588(14)00125-7/abstract

Also, of course, the "Watch" part of the strategy is very important so if there is a recurrence it's caught before it spreads. The Kaiser "Watch" procedures are:

1. Six months of folfox or xelox chemotherapy to kill any remaining cancer cells. I was encouraged to start chemo without delay.

2. A CEA, a rectal exam, a flex sig, and a special pelvic MRI every three months for the first two years, and then every six months for the following three years.

3. An annual colonoscopy.

4. An annual CT scan of chest, abdomen, and pelvis.

The special pelvic MRI was developed at Kaiser and scans the rectum in much greater detail than a standard abdominal MRI. The results of the scan are determined by a designated radiologist.

Yes, the three month follow ups are a pain but I understand the need for them, and know if I don't the alternative could be much worse. So far I've been very lucky, if I'd been diagnosed just a year earlier this program would not have been available.

Last edited by prs on Mon Feb 27, 2017 1:45 pm, edited 1 time in total.

Peter-I was thrilled to read your post (and am so happy for you!). I was diagnosed T3N0M0 on May 13, 2016. I have completed radiation and chemo, and am scheduled to have a complete resection on 9/12/16. My surgeon will not even discuss the possibility of anything but the complete resection. Would you be kind enough to share the contact information of the doctors who supported the "wait and watch" protocol? My profuse thanks in advance! Kelly

Kelly, the "Watch and Wait" protocol is not an officially approved treatment in the USA, so that may be why your surgeon won't consider it. Of course it has crossed my mind that surgeons get paid to do surgeries so it may not be in a surgeon's best interest to tell someone they don't need surgery!

I have Kaiser insurance and all my treatment was at their huge teaching facility on Sunset Blvd in LA. The Kaiser Drs are paid salary and it certainly seemed to me that everyone I saw there had my best interest at heart. It also seemed to me that this Kaiser facility had some of the best, most up to date equipment, and Drs smart enough, educated enough, and dedicated enough, to make the best use of that equipment.

If you are able to get treatment at a Kaiser facility, let me know and I'll PM you the names of my Drs.

I am glad to hear your watch and wait strategy is going well. It does not always go well. I tried same approach for six months and I went from Stage 1a to 3A. Each individual has to make their own decision and be comfortable with it. I pray that you continue to be NED.

Great news! I am on the edge a bit also with my EMR approach to large ascending colon mass. All of my docs were pushing for extended right hemicolectomy. I was lucky and found the literal Medicare father of Colonoscopy at IU. My risk tolerance is higher and I opted to give it a try. Can't imagine riding in Depends yet. I think that those of us who QUALIFY and try something new are paving the way. Best of luck and I would have made the same choice based on your summary.

My experience with "Watch and Wait" is only with the Habr-Gama protocol for rectal cancer patients who show a complete clinical response to chemo radiation. I believe that Dr. Habr-Gama has published strict guidelines for "complete clinical response" and that she developed these guidelines after years of experience using this technique. I know my colorectal surgeon has studied these guidelines and uses them to assess her patients. I'm not sure what exactly they are, but I know they include the fact that the tumor must have completely shrunk away, and that the color of the remaining scar tissue is very important.

It didn't take much to persuade me to go this route when my surgeon explained that if the cancer did return she could still perform "salvage" surgery that would be the same as if I'd had surgery in the first place. I do faithfully go to my three month check ups, it's been a year now and "so far, so good". I have just about recovered from the six months mop up chemo, and my life is pretty much back to normal.

Peter-Will you please share the contact information for your surgeon? It appears that I will have to travel in order to find someone who is willing/open to the wait and watch method. I would love to talk to your surgeon for a second opinion.Thank you!